The Missing Link: Patient Responsibility for Health Records

By Joseph H. Schneider, MD, MBA, Department of Pediatrics, University of Texas Southwestern

Sitting on the exam table before a routine procedure, I listened as the nurse reviewed my medical information. She checked my name, address, and birthday. All was well until she said “..and you are allergic to Wellbutrin, Toradol, Darvon and sulfa”. My brain sprang to attention as she continued reading that I had shoulder repair and coronary bypass procedures, that my weight was down 50 kilograms and that my father was alive. It was very detailed.

It was also all very wrong. I have no medication allergies, nor have I had any of the named surgeries. My weight hasn’t changed. And my father passed away in the 1980s.

What happened? My record was mixed up with someone else’s and my healthcare information was now seriously incorrect. Fortunately, as a CMIO, I was able to get the 120 pages of my record rapidly corrected.

But what if I was an average person, without the influence to gain quick access and to make corrections? What if I hadn’t been having the procedure? The incorrect data could have led to dangerous consequences.

Unfortunately, that is the reality for a significant number of individuals today. Patients are misidentified 10 percent of the time, resulting in an inappropriate record merger or a duplicate record. Nine percent of these misidentifications result in medical errors. That’s about one percent of all interactions resulting in errors. According to one study, a significant number of patients are harmed or die each year from identity errors.

I used to believe that patient records were best managed by healthcare organizations and physician offices. But after over 20 years in healthcare informatics, my view has changed. Because patients travel, relocate, transition from a pediatrician, get care in multiple locations, change physicians because of insurance, and many other things, I’ve concluded that it is unrealistic to expect that these multiple medical organizations can get the records of all patients correct all of the time. Even with a national patient identifier, this wouldn’t be possible. And if we can’t achieve extremely high reliability in the accuracy of our records, then a different solution is needed.

The different solution? Create a system that supports the right and the ability of individuals to be responsible for their own healthcare record and even to have control over it, with help as needed. With respect to interoperability, this means that some patients may even control what information is exchanged because they control their own records. This would augment, not replace, traditional physician/hospital controlled records for those patients who could not handle these responsibilities. The personal involvement that this engenders might be the most important step in getting accurate health information to the right place at the right time.

Getting to where patients can manage and control their records
Creating a system that supports patient-controlled health records seems challenging. Here are three things that we could be doing now to get started:

Step 1. Let’s encourage verification of healthcare data by patients
When visiting a doctor or healthcare institution, we should encourage patients to view their record, not just have it read to them. If there are errors, let’s correct them on the spot, wherever possible. Where there is disagreement (e.g., “I’m allergic” vs. “That’s not an allergy”), let’s either resolve this or record it so it is visible when the record is viewed in the future, including if the record is shared for care elsewhere.

If there is something that can’t be done in the visit, (e.g., the extensive errors in my case), let’s make it easy for everyone to get their records corrected. Too often, the request to review records takes an eternity and the records are delivered in a way that makes it near-impossible to find and correct errors.

Open Notes and some types of patient portals are a start towards this, but patients need encouragement. For those who need help in this (e.g., my 93-year-old mother who recently received a drug to which she was allergic), let’s find ways to provide that help. An example would be extending the role of care coordinators to give them the responsibility of assisting patients with their record review.

Step 2. Let’s develop the tools to enable patient-managed records
Patients with complex problems or their caregivers may track their medical data using a word processor, spreadsheet or a commercial personal health record. They often bring this to hospitals and physician offices, but usually there is no easy way to upload this information into the clinician’s EMR. On discharge or the end of their visit, these records are rarely updated automatically. These patients need better easy-to-use tools that our EMRs can use to easily upload and download data.

Let’s start by asking EMR vendors to incorporate the Blue Button. EMRs that offer the Blue Button use this for downloading health records to patients. They can then share them with other doctors and caregivers, check to make sure the information is accurate and complete, have medical information available in an emergency or plug the information into mobile apps and tools. The Veterans Administration is one of the first organizations to adopt the Blue Button. Let’s work to have all systems adopt this.

But not every patient wants to maintain their own records. For those who want to use a patient portal, they often are faced with having a portal for every place where they received care. This is absolutely NOT patient-centered. Let’s request our EMR vendors to open their EMR patient portals so that a patient can designate a “master” portal for health information that other systems would feed data to and use as a source for accurate patient information.

Let’s also request notifications to patients from EMRs any time that their records are changed. Many organizations now send us confirmations of activity electronically. Why can’t this be a basic requirement for healthcare records?

Developing tools for patient-managed records raises lots of questions such as how to deal with individuals who can’t handle their own records, how to ensure accurate or necessary information isn’t suppressed, and handling patients who incorrectly represent their history. All of these have answers, but we need true national standards or we will recreate the electronic silos of Meaningful Use. So let’s work together as patients, clinical and informatics professionals to plan how this new electronic ecosystem should work. Let’s also build in research capabilities for usability and safety in addition to clinical studies so that every patient’s daily interactions with these tools contributes to our knowledge, with their consent.

Step 3. Let’s educate everyone on the importance of patient-managed records
Everyone – patients, doctors, nurses, organizations – needs education that patients have a vested interest in the accuracy of their own health records and, with some education and the right tools, can be qualified to manage them. We need to increase the awareness of the importance of patient involvement.

The move toward consumerism in healthcare has already started getting patients to take more responsibility for the financial aspects of their care. Let’s encourage the same mindset when it comes to medical records.

We can begin by working with medical and nursing societies and patient/consumer organizations to convince clinicians and healthcare leaders that patients actually can be responsible for managing their own records.

The process has begun
Although implementation of patient maintained records may seem like a distant concept, it is not as far-fetched as it might appear.

In the UK, a personal health record company called Patients Know Best (PKB) provides patients with secure online access to manage their personal medical records. PKB is integrated into the UK’s National Health Service.

Here in the U. S., there are numerous personal health records efforts. Few, if any, are in widespread use, in part due to the challenges of maintaining them. Individual health systems such as Scripps Research Institute are working on changing this.

Summary
We have spent over $30 billion on making our healthcare system electronic, but have little in place for patients who want to take care of their own records. It’s time we focused on closing this missing link.

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